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Inhibitors

CDC Describes New Method to Detect Specific Antibodies in Inhibitor Development

January 24, 2017

Note: The following is an abridged form of an article from the Centers for Disease Control and Prevention(CDC). The original full-length of the article can be read here. The Centers for Disease Control and Prevention (CDC), along with researchers from the Hemophilia Inhibitor Research Study (HIRS), have recently published two articles in The Journal of Thrombosis and Haemostasis. The articles describe […]

Genentech Meets Primary Endpoint for Phase III Emicizumab Study

December 22, 2016

______________________________________________________________________________ Note: The following is edited from a press release from Genentech. Read the full press release in it’s entirety here. Genentech, a member of the Roche Group, announced that the primary endpoint has been met for the Phase III HAVEN 1 study evaluating emicizumab prophylaxis in people 12 years of age or older with hemophilia […]

FDA Releases “Voice of the Patient” Summary from Patient-Focused Drug Development Initiative

July 14, 2016

In September 2014, the U.S. Food and Drug Administration hosted a public meeting as part of it’s Patient-Focused Drug Development initiative, a 5 year initiative to learn more from patients across a variety of disease and disorders. We were proud to be a part of this meeting and provided support to several of the patient […]

Update #4: MASAC Issues Recommendation on SIPPET

June 28, 2016

On June 28, 2016, the National Hemophilia Foundation’s Medical and Scientific Advisory Committee (MASAC) issued a recommendation following the published results of the Survey of Inhibitors in Plasma Products Exposed Toddler (SIPPET) The SIPPET study was published in the New England Journal Of Medicine (NEJM) in May 2016. The full text of the SIPPET study is available for a […]

Update #3: SIPPET Study Released

June 14, 2016

On May 26 2016, the New England Journal Of Medicine (NEJM) published the results of the Survey of Inhibitors in Plasma Products Exposed Toddler (SIPPET) study. Investigators found that in a randomized study, when previously-untreated patients (PUPs) were treated with recombinant factor VIII, there was an 87% higher incidence of inhibitor development than when treated with plasma-derived factor VIII. […]

Infusing Love: Timeline of a January Bleed

January 6, 2016

Thomas has had his inhibitor for more than a decade, causing bleeds to be an unfortunate, but relatively routine, occurrence. We’re used to holiday bleeds, birthday bleeds, and random “where did that come from” bleeds. Be it crass or an obvious statement, bleeding happens, and we push forward. Through these tough times, we try to […]

Update #2: SIPPET Study

December 10, 2015

This past weekend, the American Society of Hematology (ASH), a worldwide organization of 15,000+ medical and scientific experts on blood diseases, held their 57th Annual Meeting to discuss new treatments and research methods. During this meeting, a group of doctors from around the globe presented the findings of the Survey of Inhibitors in Plasma-Product Exposed Toddlers (SIPPET). […]

UPDATE #1: Results of Toddler Inhibitor Study (SIPPET) Announced

November 14, 2015

The American Society of Hemophilia (ASH) released information about their upcoming 57th ASH Annual Meeting, which will be held December 5-8, 2015 in Orlando, Florida. Included in the program information is a paper abstract about the SIPPET study (Survey of Inhibitors in Plasma-Product Exposed Toddlers.) A plenary session with further information will be presented at the […]

How a Second Grader with Hemophilia Copes with Pain

June 9, 2015

Kelly and Brian of Oregon never expected their son, Bubba, to have severe hemophilia A, and they certainly never expected Bubba to experience the complications of an inhibitor and chronic pain in his childhood. Kelly shared her family’s experiences with HFA with hopes that other families can learn from their experiences. How did you find […]

Inhibitor Patients Have Increased Risk for Joint Disease & Other Complications

April 3, 2015

Note: The below email was sent by the Centers Disease Control and Prevention (CDC) on April 3, 2015: People with hemophilia lack a protein (a clotting factor) necessary for blood to clot normally. This can lead to spontaneous bleeding as well as bleeding following injuries or surgery. The best way to treat hemophilia is to replace the […]

Infusing Love: Celebrations & A Heavy Heart

January 14, 2015

My son Caeleb has struggled with an inhibitor since he was 11 months old.  Despite many doctors’ recommendations, it’s never been as “simple” as waiting to get below a 10 Bethesda Unit measurement to start immune tolerance therapy (ITT).  He developed a rare allergy to Factor VIII and there is no known treatment or protocol […]

Update #3: NHF’s MASAC Assessment on Inhibitor Studies

December 3, 2014

On September 24, 2014, the medical journal, Blood, came out with a study called, Recombinant Factor VIII Products and Inhibitor Development in Previously Untreated Boys with Severe Hemophilia A.  This study suggests that inhibitor incidence is higher in previously untreated patients (PUPs) with severe hemophilia A that are using Kogenate/Helixate.  The World Hemophilia Federation (WHF) issued a statement on October 6, and another […]

Update #1: Study Suggests Higher Inhibitor Incidence in PUPS Using Kogenate/Helixate

October 6, 2014

On September 24, 2014, the medical journal, Blood, came out with a study called, Recombinant Factor VIII Products and Inhibitor Development in Previously Untreated Boys with Severe Hemophilia A.  This study suggests that inhibitor incidence is higher in previously untreated patients (PUPs) with severe Hemophilia A that are using Kogenate/Helixate (Bayer/Nexgen). Click here to read the […]

An Inhibitor Mom Shares Her Story With the FDA

September 25, 2014

On Monday, September 22, several members of the bleeding disorders community came out to share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented. Patients and advocates of every age, every background, and with several different conditions came out […]

FDA Hosts Patient-Focused Meeting

September 23, 2014

  On Monday, September 22, several members of the bleeding disorders community came out to share their experiences with bleeding disorders treatment with the FDA.* HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented. Patients and advocates of every age, every background, and with several different conditions came out […]

Leveling with the FDA About Hemophilia Inhibitors

September 23, 2014

On Monday, September 22, several members of the bleeding disorders community came out to share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented. Patients and advocates of every age, every background, and with several different conditions came out to […]

Adult Male Disccuses Pain Management and Treatment with FDA

September 23, 2014

On Monday, September 22, several members of the bleeding disorders community came out to share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented. Patients and advocates of every age, every background, and with several different conditions came out to share […]

Researchers Prevent Inhibitors in Mice with Hemophilia

September 5, 2014

New and exciting news recently published in the journal Blood about a possible method to prevent and treat inhibitors. A University of Pennsylvania researcher has successfully prevented inhibitors from forming in mice with hemophilia by using a plant-based drug to teach the immune system to tolerate clotting factors. Read this University of Pennsylvania  press release in its entirety. ____________________________ […]

Journal of Blood Medicine: Inhibitor Challenges

August 26, 2014

Inhibitors are antibodies that the immune system develops because it sees the infused clotting factor as a foreign substance that needs to be destroyed. Antibodies are proteins that eat up the activated factor before it has time to stop the bleeding. Approximately 30% of people with severe Hemophilia A are affected by inhibitors at some […]

Octapharma’s Hemophilia A Product Approved in Europe

August 7, 2014

The European Commission has published approval of Octapharma’s Nuwiq ® (simoctocog alfa) for the treatment and prophylaxis of bleeding in all age groups with hemophilia A (congenital factor VIII [FVIII] deficiency). Nuwiq ® is the newest generation of FVIII replacement, produced in a human cell line cultured without additives of human or animal origin. Nuwiq […]

Penn Research Could Improve Hemophilia Treatment

July 17, 2014

*This article was originally posted on July 17, 2014 in Penn Current and was written by Katherine Unger Baillie. Click here to read this article in its entirety. ____________________________________ Hemophilia is a rare but potentially dangerous disease. People with the condition produce very low levels of clotting factor, the proteins in blood that stop bleeding and help begin the […]

We Did Not Fail Treatment, It Failed Us

May 20, 2014

When my son Matthew was born with severe Hemophilia A in 1994, I thought I was prepared. I had been raised by a Dad with hemophilia, lost him to HIV in 1986, and had thoroughly researched product safety prior to deciding to give birth to my son. I had prenatal testing done and knew that […]

CDC Six-Year Inhibitor Study Released

May 16, 2014

The journal Haemophilia has published the results of a six-year study called the Hemophilia Inhibitor Research Study (HIRS) that was designed to test the feasibility of conducting national monitoring for inhibitors among people with hemophilia in the United States. The study collected blood specimens on a regular basis from study participants, which were tested at […]

Inhibitor Family Camp: Our Own Kind of Oz

December 20, 2013

What is Inhibitor Family Camp? Hemophilia Inhibitor Family Camp was founded in 2010 by Comprehensive Health Education Services (CHES), and is made possible through an educational grant provided by Novo Nordisk. There are currently two programs held annually, both take place at camps that are part of the Serious Fun Network (formerly known as The Hole […]

FDA Approves FEIBA for Prophylactic Treatment to Treat Inhibitors

December 19, 2013

DEERFIELD, Ill., – Baxter International Inc. (NYSE:BAX) today announced that the United States Food and Drug Administration (FDA) granted approval of Baxter’s FEIBA [Anti-Inhibitor Coagulant Complex], the first and only FDA-approved treatment for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in patients with hemophilia A or B who have developed inhibitors. […]

Inhibitors Will Not Inhibit Our Family

October 10, 2013

I’m sitting and watching my son Blake play catch in the park with a friend. He runs for the ball and trips on a rock and lands in the dirt. I stay seated…and it’s really hard. I remind myself that we are in a different place now, but it’s still very hard. A year ago, […]


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